Just some late night thinking here.  I sometimes wonder what Kevin is thinking when he thinks of Angiosarcoma.  When I think of it, sometimes it’s almost like we’re just deailng with some illness and that’s that.  However, Angiosarcoma, as with any other major disease, becomes a part of your life.  You either accept it and it becomes just part of your life, or you ignore it and let it do its thing.

Being home has made me think a lot about that-sometimes I just FORGET that we have this illness, and then sometimes it is so very apparent.  Like today, seeing Kevin’s nausea and stomach heaving.  It’s difficult to watch, to not be able to do anything but push drugs hoping they’ll help.

It’s even harder when it’s such a rare cancer, such a rare disease that to find people who are battling it is like finding a needle in a haystack.  For me, I feel the need to just connect.  To talk to someone other than my husband who is forging and WINNING this battle.  I need to know that others are winning versus the statistics.  I’m an activist-I always have been-when something touches my heart, or affects me, I want to jump to action as quickly as possible.

Right now, my jump to action is to take the best care of Kevin as possible, and I pray that God continues to give me the strength to do that to my best abilities.  But I want to get connected-I want to talk to others and see what they’re dealing with specifically with angiosarcoma.

I know people want to relate-the statistics say that 1 in 2 men, and 1 in 3 women will have cancer in their lifetime.  That means about half of everyone I talk to has or has been affected by cancer.  So of course, they “relate”.  But it’s sometimes hard for me to see where people who’ve experienced breast, lung or ovarian cancer are coming from.  In some ways I feel jealous because I feel that those who experience these more general cancers have more information, more resources, more funding for research, more people to connect to-and they do.  However, I know it’s not right to feel jealous of their advantage because God hands us each different cards in life. (Please do not take offense to my late night ramblings-I know many, many people who have dealt with these very difficult cancers, and I feel and connect with you the same-This is my mind going to town on me tonight)

For whatever reason, God felt that we were strong enough to be dealt the rare gem.  I’ve finally found a few people online to connect with who are dealing with angiosarcoma, and I hope that opens doors to more.  I want to connect with general Sarcoma awareness groups and see what awareness we can raise here in Pennsylvania.

This disease can make you feel very isolated.  Any disease can, but when not one person knows the word Angiosarcoma outside the medical world, it is certainly discouraging.

Lift us up tonight-Kevin especially as he is dealing with significant stomach and abdomen pain.  Lift me up as I deal with the anxieties of moving forward while still being present.  Lift us up as we forge ahead adjusting to this new life.  Lift God up for his many blessings and for holding us in His arms through this ordeal.

Just a tough day….Kev is not feeling well…keep him in your thoughts today..

7:20 update

We got to speak with Dr. Thornton today which was assuring.  We will be meeting with our Lancaster Oncologist, Dr. O’Conor on Wednesday to discuss getting the chemotherapy overseen here in Lancaster, but having Dr. Thornton overseeing everything.  We pray it will work out that Kevin can do the chemo right here at home!

Feeding is going well-Kevin is slowly able to increase about 5 ml/hr every 2 days.  He’s at 115 ml/hr and his goal is to get to 180/ml per hour so he only has to feed for about 12 hours a day.  It would give him much more freedom.

We’re doing well, although today was just a down day-Kevin had lots of stomach pain all day, so we’re praying the new steroids that were prescribed work well.

I got out a few different applications today and am continuing to pray that a great job opens up in the next 2-4 weeks.

Tonight we’re literally just “chillin” and hope to have a better day tomorrow so we can get things packed up at the apartment and maybe even go to see a movie tomorrow!

We can’t wait until Kev has enough energy for us to head to the beach.

Have fun at the Solanco Fair tonight for those who went-have some fair food for us!

Kevin is having a lot of stomach heaving, and the drugs do not seem to be helping.  Pray we can get a new presription that works quickly to relieve his pain and anxiety.

I am just sending out a special prayer request for a friend of a friend, Jerry.  He has esophagael cancer and is going in for a scan tomorrow to see if the chemotherapy is working and to check on possible spreading.  We are thinking and praying in particular for him and his family.  We pray the scan goes smoothly and that everything goes well.  Lord, lift their family up during this time….we pray for healing!

From upperroom.org/devotional…such a great devotional for today!

The Bigger Picture

Read Proverbs 3:5-12

By the power at work within us [God] is able to accomplish abundantly far more than all we can ask or imagine.

ONE morning I had an appointment and was running late. After I had stopped at a light behind three or four other vehicles, the light finally turned green. But we didn’t move. I craned my neck to see the problem.

A car that had made a right turn appeared to be blocking the way as it waited for another light. I could see a large gap between that car and the one ahead of it. “If that car would just move forward to close the gap, we could all get through our light,” I muttered.

Eventually the car moved. As it did so, I saw that it was towing a very long, low trailer. I realized that I had been seeing only a part of the situation.

Afterwards, I wondered how many times I have made a decision based on what I could see without asking God to reveal the bigger picture. I thought of the times God seemed not to answer a prayer or to be responding differently than seemed logical to me.

God sees the whole picture, and acts in my life based on a higher view than mine. I have learned not to make decisions on my limited view but to trust God, who looks beyond what we can see.

Elaine Richardson (Western Cape, South Africa)

When we ask, God will give us the wisdom we need.

Bethany and Kurt

A big hug and congratulations to my wonderful brother Kurt, and his wonderful future bride Bethany, on their engagement this Sunday at one of our favorite places: Assateague Island!  We wish you many, many years of happiness together.  Love is a beautiful thing.

Well…the word is officially in.  Our OUTSTANDING case manager, Roxanne, made some calls, and found out we can get coverage through a branch of Amerihealth that has approved Dr. Thornton to remain overseeing our care!!!!!!  I cannot express how relieved, excited and anxious I was when I heard this news.  God has lifted a VERY heavy burden, and opened doors in amazing ways.  The power of prayer is awesome.

Today is an ok day-we’re having some issues with the bags connecting and not flowing properly, so hopefully we can get that remedied soon.  Everything is being worked on as we speak to get our ostomy/foley/opsite supplies that we use for Kevin’s esophegectomy, so I’m hoping we can get some answers on that by tomorrow on when we will have them arrive.

Life is good.  We’re getting used to our new routine, and we’re making it work.  I’m not very excited to finish packing up the apartment, but it must be done.  Work I just don’t want to do right now-oh well-I have some people helping so that will be nice.

Thanks again for your comments and uplifting support-leave some love for us to read!

As much as we are praying for healing, we pray often for the logistics of things to work out.  Today, I got some more things in order, and were assigned a specific case manager with our health insurance.  This greatly relieves much of my stress in having to deal with a different person every time.

However, today we found our that our amazing Dr. Thornton is out of network.  We don’t know quite what to do about this, and we’re very upset about it.  We are prayin God opens a door that she can be covered, or that we can be referred to someone in network who is just as amazing.

In the meantime, pray that I can find an excellent job with good benefits that will allow us to get back on with Dr. Thornton in the future if possible.  This also means it is unlikely we’ll be able to go back to Johns Hopkins.  Very disappointed.

We’re pushing forward and trusting God to open the doors that need opened.  As Merle, a friend we met while at JH, says on his latest blog, it’s hard to NOT look at the future and the stats.  However, we need to be in the PRESENT because that is our present to ourselves.

We pray to be in the moment as much as possible, to trust God in his infinite wisdom for his plan for us, and for Him to open doors of opportunity as His will provides.

Overall, despite that big disappointment, we had a wonderful day and Kevin is doing better each and every day-it’s so wonderful and amazing to see his progress.  God is opening doors, and we’ll trust Him to lead the way.

Today we got our first LARGE delivery of “din din”, and we’ll be off to Ephrata to place our orders for Kevin’s ostomy and foley supplies-keep us in your prayers about this because there has been such confusion between Hopkins and our insurance about what’s going on.  I just pray it goes smoothly and we can get the rest of our supplies in time.

After a few days debate, Kev and I purchased a mini-fridge yesterday so that he can have his juices handy with him at all times and doesn’ have to trek up and down the stairs constantly.  Good purchase, however, last night the power went off, and ever since it’s been acting funny.  Pray that the reset will work and I won’t have to lug it back downstairs to return it!

We have just 2 weeks left to finish our move.  Most of our stuff is here with us at our parents, but we have bunches of goodies heading to Salvation Army store, landfill, and then to a friend’s barn for storage.  Pray that we can get all this done in the next two weeks.  If you can help move anything to Salvation Army or the Landfill, that stuff is ready to go and be picked up-just leave me a message with when you can help.  Thanks again!

I’m hoping today goes smoothly-so far it is-we’re so happy to have the humidity gone.  I’m definitely not used to it after being cooped up in a hospital all summer.  The big Solanco Fair is this week-we’re still taking our time adjusting to people in the “outside” again, so enjoy a milkshake for me since we won’t be attending!

We’re forging ahead and getting used to our routine-pray for Kevin’s pain management to increase and for things to continue to move ahead smoothly.  There’s still much to get figured out and done, and we just hope that it doesn’t stress us out too much.  We just need calm and quiet getting used to our new normalcy.

Thinking of you all today-Praise God for his many blessings and getting us through these storms.

We are so glad to be adjusting to home.  It’s interesting getting used to the flushes, gauze changes, feedings, etc, but we’re handling it well, and have had a wonderful, RELAXING weekend.

Thank you for your continued prayers about the adjustment as I know we still have some details to figure out.  I’m starting to look for a job that will offer good benefits and flexibility, so that journey I’m sure will continue throughout the next few weeks.

Kevin is officially BALD now (we shaved him this morning), and getting to learn the ropes of his care.  He’s very anxious for more energy, as just short trips to run errands wear him out.  Next week we’re going to start going to the gym again, and he’s going to ease into cardio and things of that nature, but no weight lifting for a long time.  He just wants to get some meat on his bones and strength to move and be agile back.

Sorry if this post is rambling-we just got up from a nap-I LOVE Sunday afternoon Naps.  Thinking of you all this afternoon, and for tonight…GO STEELERS!